Comfort in the Midst of Heartache

My plan was to blog once a month (at least) when I stated Well-Seen. There would be stories of our journey as caregivers, trials and triumphs with our son, caregiver tips and tricks, resources, etc… And here I am six months after my last blog post. Six months. Where have I been? In the valley - some days kicking rocks and stirring up dust in anger, some days desperately looking for a pool of cool water to wet my parched throat, some days my tears the only water in sight for miles, some days unable to get up off the earth I have made my bed to wallow in for the day (or week if I am being honest), some days looking up at the mountains on all sides of me wishing I had the strength or energy to claw my way out of the pit (and jealous of those who have), some days on my knees…either in prayer begging God to get me out of here or lashing out at Him for letting me linger here so long.

In October of last year, my sweet and close friend Lynn began the steady and rapid decline into eternity as she finally succumbed to cancer. We knew she was terminal…even at the onset of her diagnosis. But doctors hoped with chemotherapy and surgery she would have another 4-5 years. She made it roughly a year - during which we were intentional to schedule couch conversations during her chemo weeks monthly. We would sit for 2-3 hours, or until she just couldn’t talk anymore - whichever came first. We laughed, used Sharpies to draw faces on her ostomy patch (That’s the kind of friend we were!), talked about our kids and our husbands, shared things we were grateful for, and snuggled her five small dogs on our laps while we did so.

During the last few months of her life, I was blessed enough to enter into the sacred space of caring for her with her daughter, husband, sister, and son. There were still a few laughs to be had, but more tears and fears and prayers as the days wore on. On November 9th, her body gave up the fight and her soul entered into the peace of Jesus. I should be happy she is not suffering anymore and whole and free from pain and cancer and everything else she struggled with on this earth and in her life…because that’s what I believe. And I am happy about that. But the sadness that still overwhelms me when I think of those last few weeks watching her and her loved ones suffer, remembering the final goodbyes with her only grandchild…I just can’t. I miss her. I selfishly still want her here.

Then on November 30th, we had to say goodbye to our ten-year-old fur baby Maddie as she succumbed to bladder cancer. Cancer sucks. Did I mention that yet? Maddie was my shadow, in my lap whenever I was sitting, under my feet when I was walking, and curled up next to my side when I was sleeping. I never thought I could miss a dog so much.

Oh, and in between Lynn and Maddie, John (hubby) got laid off from his job - the week before Thanksgiving to be exact. I had already resigned from my position as Exceptional Needs Children’s Ministry Coordinator in August to focus more on Well-Seen and be more involved with Jeremiah’s adult day program. I was looking forward to this season. But God… He had other plans obviously. I joined the Rover community and began pet sitting/caring during the holidays and then took a part-time job opportunity that seemed to God to ignore while John searched for jobs during the day and delivered for Uber Eats and Door Dash in the evenings. There have been so many interviews…1st and even seconds with the same companies…that I stopped getting my hopes up. God has provided these last four months and I am grateful, but the more time that passes that John isn’t working, the harder it gets. The fears and what if’s, the middle of the night worries, the stress of it all.

Add to that Jerry’s antipsychotics stopped working and we had to switch medications after several years of stability. Now we are battling tics from the tardive dyskinesia side effects, weight loss, and irritability and agitation that I am sure come partially from all of the different ways these medications make him feel physically as well as emotionally and mentally. We are seeing the psychiatrist weekly again. I thought with puberty and growth spurts and hormone changes behind us that we would not find ourselves here again. Discouragement. An option on the table is a return to a medication that worked in the past, but made Jerry a shell of himself. He has not been on that medication for 14 months now and we have seen him crack jokes, make eye contact, hold full conversations with people, and meet so many of his self-care and life skills that even his ABA’s have been impressed with his progress. I don’t want to go backwards. I don’t want to lose him again. I don’t want to have to go back to doing things for him that I know he is proud of himself for being able to do now. He is more confident than he has ever been. But I also know we can’t let him suffer with the hallucinations and delusions that torment his mind and rob him of peace. It’s not fair.

And with working close to 30 hours a week and not being the one to take him to his appointments and be there with him when he is struggling so…well, let’s just heap some guilt on top of that despair, shall we? Throw in some physical ailments and relational issues - doing life with people is hard - and I am aboard the Hot Mess Express. Have had my ticket punched quite a few times these last six months actually.

By now, you probably have your air violins out and are rolling your eyes at my defeatist attitude and list of “woe is me’s”. I don’t blame you, but I also wanted to be real with you and let you know why there seems to have been radio silence on my end for so long.

And it hasn’t all been doom and gloom. God is in the mess with me. I know He is. He is teaching me hard things about myself and pruning me so I can continue to grow. The growing pangs are real, but so is the hope, the belief that He knows exactly where I am emotionally and mentally and He loves me anyway. I also know He will not leave me here forever…though this season has felt that way at times - like an eternity. My good, His glory - my mantra.

Something else I have learned and am continuing to learn - God can use serving as a comfort in the midst of our heartache. Got that little nugget of a gem from BSF (Bible Study Fellowship). We are studying John this year and that was buried in the notes/lecture of one of our lessons recently. Can’t seem to get it out of my mind so thought it best to put it down on paper.

So what does it mean? Let’s go back to Lynn. My heart was breaking into a million tiny pieces each time I watched her wince in pain, vomit, cry, and slowly fade away. But being there to hand her a tissue, hold open a bag for her, wipe her mouth, or even pick a wedgie for her once (true story)…it was like medicine for my soul. It comforted me to comfort her. My heart was breaking and being healed all at the same time, as impossible as that sounds.

This year, as John’s unemployment has hit the four month mark, God has brought a record-breaking 12 applicants so far to Well-Seen. 12!!! Twelve caregivers fighting their own battles to be seen, heard, and loved. Twelve different stories of heartbreak and hope, living in the valleys of terminal illness, disabled children, foster families struggling to feed babies they know God has put in their home for a reason. And as I prepare each bag, pray for each family, and deliver each gift card for a meal or groceries, God is whispering, “See, I’ve got this. ALL of it. I have them and I have you.” Comfort. He is using me to bring it to our families and then full circle returning it to me in the process - many times in the form of hugs from the caregivers personally. He is so good.

I still hurt. I am still in the valley even as I write this. Maybe you are hurting too, for your own reasons. Maybe you’ve pitched your tent right next to mine in the valley. If so, howdy neighbor. Let’s not build a house here. Tents are temporary and so is our address. Serve…whomever, wherever, how ever…and yes, even when you don’t feel like it - especially when you don’t feel like it. And with each act you perform to make the life of someone just a little more bearable, a little brighter, to bring them a measure of comfort - no matter how small you may believe it to be - be comforted by the God who sent His Son not to be served, but to serve and to give His life as a ransom for many (Matt. 20:28).

Until next month…hopefully.